CYSHCN Financing Strategies, How AHCA Impacts Children’s Hospitals, & A New Medi-Cal Blog Series

This newsletter was sent May 23, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

Family Voices Hosts Southern California Project Leadership Alumni Luncheon May 6

The Eastern Los Angeles Family Resource Center hosted the Southern California Project Leadership Alumni Luncheon on May 6. Graduates, trainers, and Family Voices council members traveled from Los Angeles, San Bernardino, San Diego, and Santa Barbara for the event. Disability Rights California Emeritus Marilyn Holle, First 5 Los Angeles Program Officer Cristina Peña, and Senator Holly J. Mitchell’s District Director Sydney Kamlager-Dove shared their expertise on advocacy and offered tools for success as parent advocates.

In the breakout sessions, First 5 Los Angeles Government Affairs Officer Ruel Nolledo led the discussion on current policy issues surrounding Medi-Cal, Eastern Los Angeles Family Resource Center Executive Director Yvette Baptiste addressed California Children’s Services, Mental Health Advocacy Services Senior Attorney Nancy Shea spoke on mental health services, and Marilyn Holle discussed developmental disability services. Group members described their own experiences with these services and brainstormed ways for parents to get involved. Graduates enjoyed a networking lunch, and all left feeling inspired to continue their advocacy and leadership work on behalf of children and youth with special health care need (CYSHCN).

For more information on Project Leadership, a training program that introduces individuals to the nuts and bolts of advocacy on behalf of CYSHCN, click here.

RESOURCES

The National Health Law Program Launches New ‘Protect Medi-Cal Funding’ Blog Series

The National Health Law Program recently began a 12-part weekly blog series highlighting the importance of Medi-Cal for various populations within California. The first issue brief addresses how cuts to the program would harm children, and the second brief focuses on women and Medi-Cal. To read the blog, click here.

The Impact Of The American Health Care Act On Children’s Hospitals: Preparing For The Road Ahead

The Chartis Group has produced a white paper analyzing the impact the American Health Care Act (AHCA) would have on children’s hospitals. The paper notes that children’s hospitals have become increasingly dependent on Medicaid as their primary payer, so a reduction in Medicaid funding (as proposed in the AHCA) would reduce access, coverage, and payments for children’s services. In this event, the analysis outlines two possible options: hospitals would have to seek more commercially insured children and limit their Medicaid patients, or they’d have to transform their care models. To read the white paper, click here.

RelatedChildren’s Hospitals Could Lose Billions In Funding Under AHCA And May Need To Change Their Care Models

New And Updated Financing Strategies For Children And Youth With Special Health Care Needs

The Catalyst Center has updated their website to reflect six additional financing strategy categories for children and youth with special health care needs (CYSHCN): behavioral health, benefits counseling, family supports, foster care, inequities, and relief funds. These new categories are based on structured interviews with Title V/CYSHCN programs, Medicaid agencies, and family leader organizations focusing on the financing of care and coverage for CYSHCN. In addition, the Catalyst Center has updated their five existing financing strategies with new examples of innovative polices and practices. To read more, click here.

OPPORTUNITY FOR INPUT

AMCHP Seeking ‘Innovation Station’ Submissions For Emerging Maternal And Child Health Practices In Title V Programs

The Association Of Maternal And Child Health Programs (AMCHP) is looking for submissions of cutting edge, emerging, promising, and best practices in maternal and child health from Title V programs and public health agencies. These examples will contribute to their Innovation Station, a growing online database of what’s working in maternal and child health. For more information on how to submit your practice, click here.

RelatedFamily Voices Of California’s Project Leadership program was highlighted last year as a ‘promising practice’  check it out here.

Help Secure Money In State Budget To Enforce Stricter Psychotropic Drug Guidelines For Foster Children

The National Center For Youth Law (NCYL) is requesting that $80,000 be added to the state budget to help prevent the over-prescribing of psychotropic drugs to foster youth. The money would be used to enforce dosage guidelines and ensure youth prescribed psychotropic drugs have access to psychiatric services in conjunction with medication. The NCYL is urging advocates to call key decision-makers and ask them to support the budget request. For phone numbers and a phone script, click here. For more information, check out the NCYL’s fact sheet here and the state auditor’s recommendations here.

WEBINARS

May 24: Understanding Savings And Investor Choices For ABLE Account Owners

Hosted by: The National Disability Institute

More information and registration here.

May 24: Where Medicaid Stands: From The American Health Care Act To State Waivers

Hosted by: The National Institute For Health Care Management Foundation

More information and registration here.

May 24: Is Hemophilia A Secret? Disclosure In A World Filled With Technology

Hosted by: The National Hemophilia Foundation

More information and registration here.

May 25: Moving Beyond Cooperation: Engaging Families In Health Care Organizations And Practices

Hosted by: The National Center On Medical Home Implementation

More information and registration here.

May 25: Giving Medicine To Kids: Dosing, Droppers, And Other Dos And Don’ts

Hosted by: The American Academy Of Pediatrics

More information and registration here.

May 25: Diversity And Language In Patient Engagement

Hosted by: The Center For Care Innovations

More information and registration here.

May 30: Handheld Technology Supports And Transition To Employment

Hosted by: The Center On Technology And Disability

More information and registration here.

June 8: Promoting Child And Family Well-Being Through Civil Rights Compliance

Hosted by: The Center For The Study Of Social Policy

More information and registration here.

June 13: Toward Rapid-Acting Treatments For OCD

Hosted by: The Brain & Behavior Research Foundation

More information and registration here.

June 20: Supporting Families Impacted By Zika

Hosted by: The CityMatch Learning Network

More information and registration here.

ARTICLES

NPR’s 1A Podcast Recording: Covering Kids After Obamacare

Parents Of Sick Children Fear Trap If States Have Say On ‘Preexisting Conditions’

New Medicaid Waiver Rule Delayed

Trump’s 4T Budget Arrives On Capitol Hill

F.D.A. Warns Of Faulty Lead Testing In Children And Mothers

In California, Some Families Think Twice About Keeping Undocumented Children On Medicaid

My Son Has Down Syndrome: The GOP’s Health Care Bill Scares Me To Death

Who Will Care For Abril? Parents Fear For Their Disabled Child If They Are Deported

Can California’s Most Vulnerable Survive Obamacare’s Replacement?

Racial And Ethnic Disparities Persist In Sudden Infant Deaths

As GOP Tarries On Health Bill, Funding For Children’s Health Languishes

For Mother Of A Child Born With A Severe Heart Condition: The Time To Act Is Now

Study: Many Parents In Need Can’t Find Mental Health Care For Their Children

When The Immune System Thwarts Lifesaving Drugs

Ideas For Supporting Transitioning Youth, Mental Health In Rural Areas, & Pediatric Hearing Aids

This newsletter was sent May 9, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

House Passes Health Care Bill — Advocacy Must Continue As AHCA Heads To Senate

The House passed the American Health Care Act (AHCA) on May 4, a measure to repeal and replace the Affordable Care Act. The vote was close — 217-213  with 20 moderate Republicans voting against the bill. This was a direct result of the incredible advocacy of so many. Although disappointing, this is only the first in a number of steps for the AHCA to become law.

Now, the fight moves to the Senate. While we don’t expect that the AHCA can pass the Senate as is, we need to continue our aggressive advocacy to prevent any version of the bill from passing — particularly one that decimates Medicaid/Medi-Cal and threatens services for children and youth with special health care needs. For ideas on what to do next, click here.

Related: Threat To Medicaid Puts Children’s Health Care On The Line & Cuts To Medicaid Would Harm Young Children With Disabilities

RESOURCES

Action Brief: Transitioning To Adult Care: Supporting Youth With Special Health Care Needs

This brief produced by Children’s Hospital of Philadelphia’s PolicyLab acknowledges youth with special health care needs face unique issues as they transition to adult care, and that challenges during this period can lead to lapses in coverage, reduced access to services, and emergency room visits. Researchers surveyed providers, patients, and families to understand what barriers transitioning youth face, and what institutional supports are in place to help. In this brief, these barriers are identified and PolicyLab provides recommendations for providers, health care systems, and policymakers to help ease the transition process To read the brief, click here.

Data Brief: Family Caregiver Support For People With Disabilities

Results collected by The Arc from a survey on family and individual needs for disability supports showed that family caregivers play a critical role in providing supports to individuals with intellectual and developmental disabilities. The ensuing research brief details the kinds and amount of supports provided by family caregivers to individuals living in their home. Over half of survey respondents reported caring for someone between the ages of 10-30, and 40% stated they provide more than 80 hours of care per week. Emotional support, transportation, and cooking/housekeeping ranked as the top three kinds of support. To read the data brief, click here.

Related: Video: hear from people with disabilities on how their siblings support them, and what could be improved. 

Policy Brief: Access To Mental Health Services For Children In Rural Areas

This brief from the Centers For Disease Control And Prevention presents a selection of potential policies and practices that may help rural children with mental, behavioral, or developmental disorders better access behavioral health services. These polices and practices include telemedicine, integration of behavioral health and primary care, and school-based care. To read the brief, click here.

RelatedSupply And Demand For Child And Adolescent Mental Health Services & May 18 webinar on Project ECHO (Extension For Community Health Care Outcomes).

New Resources For Cultural Competency In Medicaid And Medicare Enrollment

Medicaid and Medicare enrollees are diverse in race and ethnicity, language, health condition, disability status, and other characteristics. Providing culturally competent care means respecting individuals’ varying beliefs and meeting their social, cultural, and linguistic needs. Resources For Integrated Care has released a new page of resources to support providers and health plans serving Medicaid and Medicare in offering culturally competent care. There’s information on culturally and linguistically appropriate services (CLAS), improving equity and reducing disparities, data sources, and more. To access the resources, click here

OPPORTUNITY FOR INPUT

Survey: Researchers Examining Special Education Within MENASWA Community

The Center For Teaching And Learning at California State University Northridge is gathering demographic data about Middle Eastern, North African, and Southwest Asian (MENASWA) families of children with special needs who are part of special education programs. Researchers are hoping to to identify which strategies for serving students with disabilities are the most helpful as perceived by MENASWA families. To take the survey, click here.

Survey: Young Adults With Pediatric Rheumatic Diseases Can Help Inform App

Mobile app developers are looking for young adults with pediatric rheumatic diseases (and their parents) to take a survey that will help with the creation of a smartphone app aimed at supporting transition from pediatric to adult centered care. To take the survey, click here.

Letters Of Support Needed For AB 1610: Pediatric Hearing Aid Insurance Coverage 

California Hands And Voices is asking for letters backing AB 1610, a measure which would require health insurance policies and health care service plans to cover hearing aids for individuals 18 years-old-and younger. Letters can be emailed to Lorena Gonzalez Fletcher, chair of the Committee on Appropriations, at nardos.girma@asm.ca.gov.

SAVE THE DATE

June 13, Sacramento CA: Statewide Disability Community Resource Fair. Booth registration information here, general registration here

August 12, Pomona CA: Breaking Barriers, Developing Possibilities: Bridging Pathways To Quality Health Care For People With Special Needs. More information here.

October 5-6, Houston TX: 18th Annual Chronic Illness And Disability Conference: Transition From Pediatric To Adult-Based Care. More information here.

WEBINARS

May 9: Medicaid Waivers And Children’s Oral Health 

Hosted by: Children’s Dental Health Project

More information and registration here.

May 15: Beyond Coexistence: Cultivating Successful Family Partnerships In Clinical Practice

Hosted by: National Center For Medical Home Implementation

More information and registration here.

May 18: Policing And People With Disabilities: Community-Based Solutions

Hosted by: The Arc

More information and registration here.

May 18: Project ECHO (Extension For Community Health Care Outcomes): Building Community Online

Hosted by: Family Voices

More information and registration here.

May 18: Fetal Alcohol Spectrum Disorders And The Role Of Occupational Therapy

Hosted by: The National Organization On Fetal Alcohol Syndrome

More information and registration here.

May 18: Women And Girls With Bleeding Disorders: Challenges In Diagnosis And Management

Hosted by: The National Center On Birth Defects And Developmental Disabilities

More information and registration here.

May 18: Who’s Leading The Leading Maternal, Infant, And Child Health Indicators? 

Hosted by: The Office Of Disease Prevention And Health Promotion

More information and registration here.

May 23: The Disability Integration Act And Why It Matters To You

Hosted by: United Spinal Association

More information and registration here

May 25: Moving Beyond Cooperation: Engaging Families In Health Care Organizations And Practices 

Hosted by: National Center For Medical Home Implementation

More information and registration here.

ARTICLES

My Medicaid, My Life

Complex Child Magazine: Annual Respiratory Edition

Kern County Stands To Lose Big If ACA Is Repealed

Screen Children With Neurodevelopmental Disabilities For Vision Problems

Bipartisan Legislation Enhancing Childhood Hearing Loss Initiatives Praised

Severe Shortage Of Home Health Workers Robs Thousands Of Proper Care

Babies’ Brain Signals Offer Window Into Treating Their Pain

Scientists Create Artificial Womb That Could Help Prematurely Born Babies

Why Some Adults, Event Into Their 40s, Still See The Pediatrician

San Francisco’s New Assistive Technology Lab

Project Austin Teaches Emergency Responders About Kids’ Special Medical Needs

Before You Act On Health Care, Congress, Consider Children Like My Wendy

Jimmy Kimmel’s Emotional Monologue: His New Son’s Heart Condition

 

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